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Distant recurrence risk

Breast Cancer | Last Active: Aug 8, 2023 | Replies (23)

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@mayo101

Hello, I am someone with a double mastectomy and no reconstruction diagnosed with LCIS, lobular carcinoma in situ, which may be a precursor to lobular cancer. I asked my oncology surgeon if I should start on an endocrine therapy to further reduce my risk, she said no due to risks not justifying benefits. I am 52 years old and still having my period so my only option is Tamoxifen, which has the uterine cancer risk that is making me hesitate. I am thinking of waiting until I reach menopause and then start on an AI. Also, I feel that routine screening is important and am wondering whether breast mri for someone without reconstruction is possible. Does it involve laying on our stomach as if we had breasts except there would be nothing to insert into the hole where the breasts normally would go? Lastly, if you had continue doing yearly MRI’s,do you think your recurrence would have been caught earlier? Thanks for any input you can give me.

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Replies to "Hello, I am someone with a double mastectomy and no reconstruction diagnosed with LCIS, lobular carcinoma..."

Hi @mayo101 -- yes, you can still have a breast MRI after a mastectomy. Seems odd, but I had the MRI the same way as before the mastectomy, lying on my stomach over the empty holes. When I stopped having MRIs, I had very thorough ultrasounds so I don't feel like anything would be different if I had MRIs all along. Just my gut feeling. I also liked that in ultrasounds, I could ask about spots that felt odd to me and they would do a focused check on that spot and say, bone, scar, etc. Ultrasounds are so much easier. I don't know about you, but I found the superman position for the breast MRI very difficult for my 54-56 year (at the time) old body with neck, back and shoulder problems. I didn't turn down any MRIs and followed advice, but I was perfectly comfortable with just ultrasound. The last MRI I had I was told that was a miscommunication with her staff and they were supposed to order ultrasound for me. Keep doing your self checks monthly because with my recurrent cancer I could easily feel mine in my chest wall. I had ductal breast cancer, not lobular so I don't know if anything would be different for you. My ultrasound one year before my recurrence was clear, but my recurrent cancer is super aggressive and fast growing so I don't think they missed anything earlier. I also have two different breast cancer mutations that make me more vulnerable.

I was post-menopausal. It was actually surgical menopause since I had my ovaries out at the same time as the mastectomy (due to BRCA2+). My oncologist thought I didn't need Tamoxifen or any med in my case and I was a CYP2D6 poor metabolizer so he thought it wouldn't work anyway. He said there was an alternative med for poor metabolizers, but more expensive and I imagine the same risks if it served the same function. Told me not to take that either. My current oncologist disagrees with the original assessment. I understand your concerns about side effects/risks. I've turned down a lot of meds in my life due to my fear of side effects.

I suggest the same thing to everyone: don't hesitate to get a second opinion on your treatment plan especially if you're not sure which way to go. It's nice to know everyone is on the same page. Insurance will cover it. No reputable doctor has an issue with you seeking a second opinion and most welcome it. Would things be different if I had sought out a second opinion??? Maybe. Blessings to you. 🙂

MRI is possible with post mastectomy flat aesthetic.

My cousin has been on Tamoxifen for years with no side effects. I read that the Uterine Cancer risk is very low, but you would have to ask your doctor about that. It is very good for your bone health though, while the Aromatase therapy you might take after menopause is not. So, there is that. I also was diagnosed with LCIS and my surgeon said it was nothing to worry about as it rarely goes outside the ducts. She did remove it though, which brings me to your first sentence. How do you have DCIS without breasts and if you have had a mastectomy, they would surely have removed it? I wonder if you can still have a mammogram, even after your surgery? Questions for your doctor! I hope all goes well for you going forward. Blessings!